Paige Koontz Sherman lives in Warrenton, VA, with her husband and two children.  Paige, a Technical Project Manager for Verizon in Ashburn, VA, speaks about her journey with type one diabetes (T1D), including her participation in many artificial pancreas clinical trials.

 

When did your journey with Type 1 diabetes (T1D) begin?

I was diagnosed at age 5, 38 years ago.  Feeling abnormal and sticking out like a sore thumb – these are my earliest childhood memories.  Over time, I overcame my fear of getting shots and developed a thicker skin.  Thick skin isn’t necessarily a bad thing to have.  I don’t sweat the small stuff.

Growing up, my mother was a teacher in my elementary school.  She would leave her classroom to give me shots.  My maiden name was Irene Paige Koontz.  I am named after my paternal grandmother, Irene Brock Koontz, who had T1D and died from its complications before I was born.

In my early thirties, my journey was complicated by a diagnosis of rheumatoid arthritis.  Two years ago, celiac disease further complicated things.

 

Our personal and professional lives can cross in unexpected ways.  Describe how you brought an idea to Verizon, your employer, which leveraged your company’s telecommunications expertise in support of kids and teens with T1D.

In 2014, I heard about an artificial pancreas clinical trial that needed technical solutions related to outdoor summer camps in areas with very limited cell phone and internet service.  There were two camps for kids 7 to 17: Camp Campbell in Boulder Creek, California, and Camp Conrad in Angeles Oaks, California.

I saw the opportunity to leverage my company’s network and technology to support the joint effort by the University of Virginia’s Center for Diabetes Technology and Stanford University’s School of Medicine.  I presented the challenge to Verizon and my company embraced the idea.

The challenge? Letting kids be kids at summer camps in remote parts of the country while ensuring that data from the young people’s artificial pancreas systems were reliably and securely sent to researchers.  No small feat when you consider that Camp Campbell in Boulder Creek, California, has cabins 100 feet in the air, surrounded by the redwoods of the Santa Cruz Mountains.  The one-week test went off without a hitch. Kids were happy, parents were altogether positive, and university researchers got critically important evidence to add to their AP clinical trial experience.

 

What role has family played in helping you manage T1D? 

My entire family has been very supportive.  My mother is my advocate and my father, the fixer.  As a young child, when I complained about taking shots, Dad drove to Baltimore to buy an Injectomatic device to insert the syringe less painfully and not let me see it coming.

My husband has always been helpful by watching out for me, especially when my moods change suddenly.  He knows my blood sugar may be high or low and I need to pay attention to it.

In more recent years, my girls became partners.  I’m grateful each day for them – Sydney, 15 years old, and Lindsay, 13.  My younger daughter watches me like a hawk.  If she senses I am acting the least bit funny, she will be the first to say — “Go check your blood sugar.”  Another favorite: “Mom, you’re beeping.  What’s your number?”

When my girls were quite young, I signed them up for the TrialNet study.  It gives me peace of mind to know we’re looking out for T1D disease markers.  Fortunately, we live in a time when delay and prevention of T1D are part of the conversation.

 

Are there some smart things you’ve done to manage T1D? 

By far, the smartest thing was participating as a patient in artificial pancreas clinical trials.  I always thought of myself as a T1D veteran but jumping through trial hoops forced me to rethink everything I thought I knew about T1D.  The experience brought home to me the importance of data and the short- and long-term consequences of ignoring data.  Clinical trials unravel T1D puzzles – for researchers but also for people like me who have to fight the good fight each and every day.

In my first trial in 2009, everything happened in-hospital.  Several later trials occurred overnight at the hospital or over a couple of nights.  I was hooked up to a continuous glucose monitor and tethered to a laptop. At one point, blood pulls every five minutes were part of the drill.

Fast forward to 2016.  Heading into last year’s trial, my A1C was 6.6.  At trial’s end, it was 5.8.  I was sleeping through the night at home without highs or lows.  I would wake up feeling good – a feeling that amazed me each and every day. I learned about my insulin sensitivity during particular times of the day.  I studied how my body uses insulin — things I can’t learn from a quarterly check-up with my endocrinologist.

Trials taught me not to just sit back and expect change.  I needed to step up and get involved.  Over the years, I learned from watching and listening to mathematicians, engineers, device manufacturers, doctors, and nurses for whom partnership, not competition, is key to crossing the finish line.